It’s been a while

Standard

I’ve been away from my computer.  Not much has changed with my RA except that it’s getting worse lol My knee and my hands are just not liking me too much.

This cold weather is not helping at all either, it’s like 10 degrees with a windchill of like -14.  Yes it sucks.  I did manage to get a concussion and whiplash by banging my head on a pipe in the basement, I ran right into that sucker.  Apparently I have post concussion syndrome, I go see my NP tomorrow, she’s just going to tell me I need PT.  I’ve had trouble with my neck in the past, it took 6 months of PT to fix it, I have a neck pillow even, usually when my neck hurts, after a nights sleep with that pillow I am fine, but this is not the case.

My friend hasn’t moved yet, not sure when she is moving, I haven’t talked to her in a few days, I think, my memory sucks right now.

Losing a friend to a warmer climate

Standard

Someone I met through FB RA group is moving away to California at the beginning of the month.  While I’m happy for her and know she needs to do it for her health, I am extremely bummed that she is leaving.  She said well we talk most online anyway but that’s not the point, she’s leaving the state, she has been there for me so many times when I needed someone, now I will having nobody.  Quite frankly I’m upset about it.  Plus she’s been busy with seeing other people before she leaves and I just don’t think I’ll end up seeing her before she leaves, well wait, I’ll will because she’s giving me her bed.  But I just want to hang out and talk, I’m really going to miss her, she is the only one who gets me because of the RA.  She’s a great person and I’m really going to miss her presence in my life.

Root Canal Imflamed

Standard

So anyone with RA ever have an inflamed root canal?  Not sure it it’s related but I got it lol  My mom is in heaven saying to herself, only you Dawn, only you.

Not a good pain day

Standard

I’m in pain everyday but today, even my hip joints hurt, it hurts to type so this will be short, I hope this Rituxan kicks in quickly because I really am so sick of this shit.  I’m a big baby right now, so tired of the pain.

General Status

Standard

I’ve been having a fever everyday for the past week and a half, I’m not sure if it’s because of the infusion or just general RA crap.  It’s always hard for me to tell with anything if it’s RA related, I guess most of it is, I also have fibromyalga so I know some of the pain I get is from that but the not well feeling and the joint pain and other things I know are from the RA.

I use a sleeve thingy for my knee now, I don’t wear it all the time because I don’t want to depend on it, I went about a week without it and my knee started giving out on me again, so I’m back to use it.  It does give me relief and I’m so thankful for that.

I don’t see my RA doc until the end of the month, then we’ll find out from the blood work if the infusion is working.  I don’t notice anything getting even a little better but I’m going to stay neutral with my feelings on it.

Second Infusion

Standard

Well it was only suppose to be 3 hours this time…..they said…….not gonna happen when you’re talking about my body and how it dislikes all medicine put in it.  I had a reaction, heavy chest, lump in throat, had to stop the medication,, give me benedryl in the iv, twice, then steroids, then restart at a very slow pace.  I got there at 9:45 and left at 4:00, there hours, it was a long three hours.

Feeling pretty crappy today, can’t talk, not sure what that’s about but it’s been happening more frequent than not, I’ve heard there are joints in the throat, maybe they are inflamed.

My blood work didn’t change from the first infusion of this drug, I go see my RA doc the end of October to see if it’s helping, not sure what he’ll do if it’s not.  I’m indifferent about it, I just have no confidence in the medication used for RA, I’ve found no relief what so ever.   We shall see…………..

New infusion

Standard

So I startred a new infusion today.  I got there at 8:45 didn’t leave until 4:30, the infusion lasted 5 hours, the rest was waiting to see my dr.

I have been having issues with my knee, really bad issues and a ton of pain, I couldn’t sit or stand without major pain.  I got my blood work back on my chart online so I checked them before I saw him, all of them were high, esr, c reactive protien, liver enzymes, creatine.

He finally came in the room, I was in there for an hour.  I told him about my knee, he looked at my mri, read the findings, tedonitis, strained ligatminets and a tilting knee cap, but at the end of it it says mri negative, pardon me but what part of major pain is negative? I asked  him that, he said that the pain I have is consistant with what is said in the mri but it’s much worse than what the mri says because of the pain rate, which is infinity if you ask me 1 thru 10.  So he checked my wrists to see how they bend, not so well, they are getting worse he says, your knee is very swollen he says, her ankles and feet are swollen he says, your elbows are swollen too he says.

He is really a great RA doc, I trust him with my life.  He gave me a shot in the knee which hasn’t really helped yet but he gave me this knee brace, well he called it a brace but it’s more like a sleeve with a hole in it, he said that will help with my pain of getting up and down and it has.

I got back in 2 weeks for my second infusion, this one will be only for 4 hours, then I see my RA doc the end of October, he calls it the waiting game, to see if this is working, he said that normally this is given to those further along with the disease but he said since I’ve rapidly been decreasing, he selected this one.

fingers crossed